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My Tips for Managing Post-Revlimid Gut Issues
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Revlimid: Working persistent gastro and gut challenges
Six months ago I was MRD negative with no detectable MM cells (!) but even off Revlimid my stomach and gut issues continued. The gastritis had come out of nowhere after 5 yrs on and off Rev. My annual PET scan showed the top (fundus) of my stomach lit up with inflammation. This was not my reflux or GERD. This was new and different.
I got a referral to a top gastro and she didn't have anything to suggest. Nothing. Just see if it gets better. I was surprised, but I was not surprised. MM patients have to talk to credible people, gather credible evidence, and do experiments - with the concurrence of their medical team of course.
So I got busy. And six months later there is improvement. Here are the things I continued and new things I tried:
Continued practices:
. VPAP machine to reduce micro-awakenings that damage the immune system. (BTW, I am thin and never snore. But I have sleep-disordered breathing. It’s a brain thing.)
. Plant-based diet, no added sugar to reduce inflammation: see Anticancer book by David Servan-Schreiber
. Low FODMAP diet for IBS, must use the Monash University app ($10) to see the portion sizes that can be tolerated
. Snacking only on organic FODMAP items: Brazil nuts (Costco), walnuts (organic at some Costco locations), dried Montmorency cherries (Costco), dried edamame (Starpoint Farms on Amazon, not organic), unsalted peanuts (WM, not organic). Note portion control is essential if you have problems with FODMAPS. These are all anti-inflammatory and probiotic foods.
. Fast walking for cardio, usually morning and evening for total of 7000 steps
New things in the last 6 months, in roughly the order I started:
. Tracking HRV with a Garmin Nuvi watch to see periods of stress during the day
. Tracking sleep with the Nuvi: it is not very accurate but gives an overall trend of sleep quality. Note most wrist-based sleep trackers are useless because they are so inaccurate. I tried and returned Fitbit and Polar, and then got the Nuvi. Not cheap but it is OK.
. OmniPEMF Headband for vagus nerve stimulation in the afternoon and Theta meditation in the evening https://omnipemf.com/how-pemf-works/
. Neurofeedback with Muse S2 headband before bed, goes deeper than mindfulness meditation for me https://choosemuse.com/pages/science
. OmniPEMF Pad under pillow, Delta 4 Hertz overnight to increase deep sleep (rarely waking at 2 am for the first time in decades)
. Anthony’s organic whole psyllium husk (Amazon). Note Metamucil has either high sugar or artificial sweetener banned in Europe. Suggested by social worker in support group.
. Amitriptyline 25 mg for “functional dyspepsia”, suggested by PCP . Slows down the whole gut system a bit.
. Probiotic each day
I have been able to gradually taper off Gaviscon Double-Acting (Alginate imported from England), then licorice DGL.
When my stomach is uncomfortable I eat a little bit of Stevia powder which makes me salivate.
I hate to admit it, but one key was taking a PPI: Pantoprazole 40 mg (Protonix). My PCP argues that this is worth the problems it causes as long as I take B-12 sublingual (for absorption) and calcium.
I will soon start to taper off the PPI, transitioning to an H2 blocker (Famotidine), then stopping that slowly to avoid acid rebound. Even if I could get stable on Famotidine this would be better than a PPI.
My gut has gradually stabilized but I still have excessive and sometimes loose stools. But much less. I would also like to taper off Colestipol.
The gut is most of the immune system. It is very complex. So it can take a long time to stabilize after Revlimid.
So which of these experiments worked? Maybe all of them helped in their own ways. Maybe none, maybe I would have gotten better without any of them.
If you like certainty, MM is not the disease to have.
Google anything you are interested in above.
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